Restless


(Chad) #1

Good afternoon, I am a newbie to this so please bear with me. I wrote this as a matter of introduction on a different community. My 4 year old was diagnosed with Type 1 on 04 October. This has been very overwhelming. I have been reading some of my wife’s counseling books and they say that chats and journals have a therapeutic effect when dealing with life altering events so here it goes.
I can handle a lot. Pain, Emotions, Deployments. I’ve seen atrocities that no human or animal should ever be subjected to. There is something different about seeing your child screaming on a hospital bed because she needs to get shots and doesn’t understand why because she feels fine. She says she will stop coughing if I just take her out of there (she had a little cold as well). Then we get told those life changing words “You’re daughter likely has Type 1 diabetes.” I lost it, hard, the kind of emotion you only show God in a prayer closet by yourself in the middle of the woods. The only thing I could think was how can I solve this? I’m an Engineer. I solve problems. Show me the problem. Then it hit me. I cant solve this. I cant take it away from her. I have never been more helpless in my life. Pure, True, Utter, Helplessness. Every time I prick her finger a piece of my soul detaches.
Every day things have taken on a new meaning. I cant leave her at her preschool, with our favorite babysitter, take her to her favorite Chinese buffet (yet). My daughter, my world, has been forever changed. I’m thankful that the staff at CHKD showed us how to take care of her, but right now we are surviving by a fingernail. Shots, corrections, carb counting, arguments about whether that was a full 1/3 of a cup.
My life summed up in one word Restless.


(Ryan) #2

Chad,

I don’t post on here a lot, but as a father of a young daughter with T1D, your post grabbed me. It took me back to the early days of when my daughter was first diagnosed. It was almost a year ago, when we were told my 6 yo little girl had Type 1. I recall the fear, the anger, the helplessness, the confusion of how did this happen, the feeling of “I can fix this, I can make her better”; only to get smacked in the face by the reality that you can’t. Having to physically restrain my crying, terrified, confused little girl so she could get her insulin is a feeling I wouldn’t wish on anyone. Like your daughter, she tried to bargain her way out them. She would say things like “I promise I won’t get sick again, if you won’t give me any more shots”. It absolutely gutted me every time. I would have to excuse myself after every shot or finger poke, so I could break down and cry for 5-10 minutes…Every. Time. I probably cried more in those first few weeks, than I had the previous 10 years combined. I felt like I had failed her, that I had failed my primary job; which was to protect her. Now all of the doctors and all of the books tell you there was no way I could have prevented this, but those words didn’t change that thought in the back of my mind. I was a complete mess emotionally, but I had to hold it together in front of her. Me and her Mom needed to be her rock. As scared as we were, she was just as scared if not more, and she was looking to us to know everything was going to be ok.

Fast forward to today, and it feels like those days were a lifetime ago. There are still days where we have our moments where we feel like we still don’t know what we are doing, where what worked yesterday doesn’t work today, but as cliche as it sounds, it does get easier with time. Kids are amazingly resilient. They seem to adapt quicker than a lot of adults, and it becomes almost in the background. Soon enough, you’ll realize that she is still the same daughter than before she was diagnosed, but with just a little extra oversight needed. Something I struggled with early on was learning to not see her as “sick”. When we got out the hospital, I handled her like fine china that would break with the slightest touch. Luckily my wife was around to slap me awake to the fact that she was still our little girl and she hadn’t changed. She could still do her dance, play soccer, swim, wrestle with her little brother (who ironically was diagnosed with T1 exactly a week after her), and she would be just fine.

I guess the advice I would give you, having been where you are now, is to allow yourself to have those feelings you described. Nobody needs to justify feeling scared, angry, etc it is perfectly normal. Type 1 sucks! It does. But it does become easier. It really does. I can’t tell you there was some magical moment when that happens, it just seemed to evolve over time with us. As best you can, try to keep those emotions in check in front of your daughter. You can excuse yourself, to “let it out”, but right now your daughter is looking to you to know it’ll be alright. Lastly, accept that you’re not going to be perfect. Type 1 is ever changing and you do your best to manage it, and that’s all anyone can really do. So many things constantly change with this disease, and so many factors effect it, that you can’t control. You’ll drive yourself crazy shooting for, and expecting, perfection. “So is that a 1/3 cup, or a little less/more?” Make your best estimation and roll with it…

It sucks right now. It does, and I would never try to convince otherwise. But it will get better, you just have to give it time. Unfortunately there’s no way to shortcut the crappy parts, you just have to do your best and you and your daughter will be fine. As much as is reasonable, let her be in control. Obviously, we have to do most of her carb counting and dosing, etc but early one we tried to let her have as much say as possible. Even if it’s just being able to pick which finger gets poked or where she wants her insulin shot. The more say she had, the easier it became for all of us over time. We kind of came to an agreement that as long as she picked a different spot every time, she could decide which area. The other thing that really seemed to help her is she was able to give us a shot as well. The hospital gave us a couple of vials of saline to take home, and we used that for our shots. This seemed to help her feel more control as well as gave us an idea of what the shots were like.

Anyway I’ve rambled on enough, but I truly wish you and your family the best of luck going forward, and trust that everything will be ok.

Best,
Ryan


(Dennis J. Dacey, PwD) #3

Chad @Restless_Daddy, as an engineer you may not be able to “fix” her TypeOne cut you certainly will be able to assist her in learning to manage HER diabetes and have an awesome life. And along the way with your skills you could develop some helpful tools for her [and for me] that will make life more “normal”.
During the 60+ years since my TypeOne diagnosis [although the name TypeOne didn’t exist then] I’ve seen some really good advances in diabetes care, and I’ve volunteered my body for trials - some which worked and others that failed - that are now very common treatments amongst people who have the fortune to be blessed with our condition. During my life with diabetes I’ve experienced many ups and many more downs but I’ve pushed through both as entrepreneur and in the corporate world pushing my way from clerk to president and chief executive of a nationwide corporation with facilities from Boston to Florida tot Hawaii and many locations in between.

I can relate to your frustration having experienced very similar feelings while sitting beside the “warming tray” [glass baking dish on a heating pad with clingwrap covering] in the NICU stimulating my granddaughter so she would breath - born 22 weeks premature with meningitis, without an immune system, only a partial lung and without an instinct to breath. We were counting the minutes she had left - but she survived with a lot of help from many. She became a fighter and now has a room full of trophies and is a professional with a dance company - point ballerina. Your daughter’s future can be bright too.


(joe) #4

@Restless_Daddy hey Chad, believe me there isn’t anything worse than when your training and instincts let you know how to fix any machine or a solve any puzzle, but you can’t help your kid. The others have said a lot. A 4 year old cannot comprehend what “chronic illness” is because they can’t wrap their head around their own mortality. They also can’t understand why the doctors can’t fix her and why you, of all people, can’t fix what’s wrong with her. you’ve fixed literally everything else… why now?

I guess it’s a “reaction”, of a kind to feel like you did something wrong when you get diagnosed. I sure did. I always thought diabetes was a punishment.

I can ask you to go slow, to breathe, and to accept you need to learn a new language, and new skills like how insulin works and when to trust a bg meter. This’ll take a year. The other thing to ask is for you to fall back on your training: this is not a catastrophic failure, you still have your child… after this pain comes the concept of how to mimic the body’s automatic blood sugar control by balancing insulin, carbs, and activity. carbs make bs go up, insulin and activity make it go down. the feedback loop is broken because an input has been disabled; so you are the feedback loop. ONce you learn it you need to train her so she can make those same decisions and know what to do.

I’ll see @Dennis 60+ years and add my 40, that’s 100 years experience you can reach out to anytime you need to, and there’s literally hundreds if not thousands more here for you.


(mikefarley) #5

Hi Chad Dad!

As others have mentioned, your engineering background will be a blessing and a curse. Take the good parts, and use them to help your daughter build habits/processes and decision skills over the next decade. That will give her a foundation for life. When you get frustrated that you can’t engineer a perfect solution, IMO that can become a great life lesson for you. I am an engineering type, process focused, and it’s easy to lose sight of the fact that there’s a lot in this world we just can’t control.

One last comment. Your daughter is going to have a lot more technology help than we older-timers have had. That is going to help her manage her blood sugar, but you’re going to have to monitor those advances for now. Odds are, your daughter is going to have a long, enjoyable life - just not as easily as some people.


(Denise) #6

Hi There
My daughter (9) was dx in Aug. I am a pediatric trauma nurse and have dealt with this diagnosis multiple timed professionally… as a mom this was a game changer. As I read through your posts I share the same emotions. At times, this is unbearable , overwhelming and just scary. Then I slap my nurse hat on , grab control of myself and take care of my daughter . I find many people just don’t understand how difficult this is. I struggle with the carb counting… every. Single, meal. And the wonder did I give too much insulin … is she going to eat all her food?? And the. The panic sets in… she’s dropping fast and where did we mess up? Did I miscounted? Did I give too much insulin? I need to recover her is the applesauce going to work? It’s all so much… and we need to Remember going from 250 to 68 in an hour isn’t so much fun for them either their little brains need to keep it together while experiencing these swings and sways.
I’ve had little to no support in my home. My family lives far and they do their best. So my nursing backround helps me but as a mom it’s hard to cope. It’s hard to see the light at the end of the tunnel… because the tunnel is lifelong with this diagnosis.
So I’ve had more years in the past two months then I have had in a lifetime. Never in front of my kids… but definetly my eyes leak at weird times. The blow up mattress next to my daughters bed… houses me well as nighttime lows still occur but not as much. I appreciate reading what you all are going through, and I’m sorry you are but we are in it together, the kids are resilient keep it moving forward motion …


(Medora) #7

I am so sorry. It is a hard road but you can do it. Your daughter is blessed to have you in her life. I am praying for her and your family.


(wadawabbit) #8

Hi Chad. I can’t speak as a fellow POD (Parent of Diabetic) but I myself was diagnosed in 1963 at 3 years of age. I’ve been diabetic (or had diabetes, if you prefer) for 55 years and am still going strong. My parents have both passed but I remember them telling me my dad hired a nurse to come to our house to give me my shots when I was first diagnosed. Eventually my mom learned to do it until I finally took over when I was old enough. I don’t recall that far back so I don’t know how long it took me to finally get used to taking shots - but eventually I got to the point where I could measure out my insulin, select a spot and inject it while conducting a conversation without missing a beat; and having started with shots at such a young age they don’t faze me now. Of course taking insulin isn’t the only reason to use a needle - you have to prick your (her) finger to get BG readings as well. I don’t know that Continuous Glucose Monitors (CGMs) are used in children as young as yours but that may be something to keep in mind for the future. Finger sticks are still required for some CGMs but perhaps not as many as with standard testing. There is a relatively new meter called the FreeStyle Libre, by Abbott, From what I’ve seen advertised you apply a sensor to your body and pass the meter over it to get a reading. I suppose it’s a sort of hybrid between a standard meter and a CGM, but while a standard CGM updates readings every 5 minutes this one simply takes the readings periodically. All of which is to say it might be preferable for your little one in lieu of sticking her finger multiple times each day.
I know you said she’s only 3 but keep in mind when she gets older that there are diabetes camps. I attended one for several summers when I was little and kids learned how to manage their diabetes in a way appropriate for their age (what applies to an 8 year old is of course different than for a tween).
Anyway, wishing and praying the best for you and your little one. Although this is not something you can fix it is something that you can learn to manage. There are diabetic entertainers, professional and Olympic athletes, Miss America contestants, race car drivers, parents and people in most any profession you can think of. So take heart. I’m sure it’s heartbreaking to see your baby going through this but with technology and support systems she can join the ranks of long term patients like me, assuming a cure isn’t found first. Be well.


(wadawabbit) #9

Me again. I see a couple of post-ers have talked about the challenges of carb counting. I found an app that is really great for diabetes tracking. I tried a few before I discovered this one and have stuck with it ever since: it’s called MyNetDiary and is available on Google apps and I’m sure in iTunes as well - it’s free for a while but you do have to pay an annual fee at some point.
It tracks BG, insulin, other meds (if you want), exercise, weight, BP… And it has an extensive database of foods, including those from many restaurants. Select the item you are having and the item or portion size and it calculates the carbs, calories, etc. for you; and if what you want is not in the system you can add it manually or I believe send a request to have them input it for you.
I used to carry a pocket sized carb count book with me but this is all I use now and it’s a real God-send. If you’re counting calories you can enter your calorie allowance in the system and the dashboard will show you how many remain after each entry. Check it out.


(Jeremy) #10

I’m a dad of a 3.5 year old daughter, diagnosed in Feb 2018. So I’m new to this. We use a Dexcom CGM and an Omnipod, both of which are immeasurable in value to us.

I generally consider myself fairly intelligent. T1D, for a parent of a very young child, is a complete sh*tshow and stressful beyond belief. In some therapy right now, and I think the therapist said it best: we’re basically in high stress, fight or flight mode every day, on limited sleep. And I think that we’re doing reasonably well, A1C wise. We’re super vigilant and responsive. But it is all consuming and constantly stressful. The constant stress is debilitating.

I know there are a ton of overwhelmingly positive guide posts for us all. But I just wanted to let you know that it was OK to think that you’re mired in a complete mess and that life will forever be like this. The population of parents with young children with T1D is fairly small. I sometimes think that I just have to nod my head as if everything’s OK, when speaking to others in the T1D community. It isn’t. Yes, it will be better than right now but I can tell you, 7 months into it and fully on top of our T1D “game”, you might run into just different chaos and different heartache. At least I have. The “you’ll adjust to it” conveyed to us over and over in the hospital. Yes, you do adjust. But that doesn’t lessen the pain, sorrow, stress, hope, love that will all be heightened throughout.

Take care


(Stephanie) #11

My T1D is also four years old DX end of August 2018. We are using the Dexcom G6 and Omnipod. We are now sleeping again thanks to the G6. I can relate to all the posts and find comfort in the long-term diabetic stories. My emotions were the same for the first month. By the second month, I just got tired of being sad. Realizing I had a choice in my outlook gave me tremendous strength. Wishing things were different, but for now dealing with the cards we were dealt. Peace and strength sent your way.


(Beth) #12

Chad,
You sound like an amazing father. It can all be quite overwhelming. I know you’ll get more from other newbie parents. My daughter was diagnosed at age seven twenty-nine years ago. She is now a very healthy,happy mother of a four year old daughter. It is unbearable to imagine my Granddaughter at this age having to go through what her mother did. I can clearly remember feeling the way you do:the shots,food questions,screaming in pain and not understanding it all. Things were so different back then,as so many advances had not been made. It’s so frustrating to want to “fix” it and not be able to. I think each and every parent can understand that. All we can do is do our best. And it certainly sounds like you are. We were young parents when our daughter was diagnosed and sometimes I wonder how we managed. I think you’ll be amazed at how well you all do as time goes by. You love your daughter so much and that makes all the difference in the world in terms of her Diabetes management. I still hope and pray for the cure. And wish you and your family all the very best.

~Beth


(joe) #13

The hardest thing I ever have to explain to anyone affected, either directly or as a care-giver is this: It isn’t easy. It will not get easier. It does become more routine.

The way you get over the routine (these high and low blood sugar emergencies) is by repetition. Realize your target is tiny, and even our best available tools are crude, inaccurate, and slow, and so there is no such thing as stable or level blood sugar.

The way you get over the guilt is by re-framing your thinking, and by talking about it. I hope you can also reach out anytime you are struggling.


(yanine) #14

My son is almost 4 years old being a diabetic, the first year I cry and cry, wondering why my son? What did I do wrong!!! He does not deserve this, it’s a difficult road, I’m a single mother, when my son was diagnosed, after a few months I got divorced, I believe in God, I think we have to scream, cry, run away, but finally take a break and move on with our children, I have days when stress and anxiety kill me, I do not sleep at night because of fear, because your sugar goes down and I’m asleep, it’s not easy but when you read everything that you pass, now I know that I’m alone on this road